A Day in the Life: Grace Receives a Rituxan Infusion

Every six months, my 16-year-old daughter, Grace, receives a dose of Rituxan (rituximab), the latest and greatest treatment we have added to her regimen for Lambert-Eaton myasthenic syndrome (LEMS).

Before that first dose, Grace was exhausted all the time. She was able to do very little outside the house because her energy was so low. She could not walk more than a few steps without assistance. Her voice was weak and shaky.

Grace had responded well to prednisone, but because of the side effects, her doctor wanted her to wean off of it. At that point, her team of doctors thought it most prudent to try Rituxan.

Although Rituxan is prescribed for LEMS, its effectiveness in LEMS patients has not been tested in clinical trials. However, I can attest to its effectiveness in Grace. Rituxan has made an extraordinary difference. Grace has so much more energy than she did before the treatment. Her stamina has increased and her walking is sturdier. Grace struggled with slurred speech, and that has mostly disappeared. She has gotten big pieces of her life back since beginning this treatment.

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Last week, we woke early to make our way to the children’s hospital for what would be a 12-hour day. The nurses started by running her IV. Her rheumatologist, who prescribes Rituxan, had also ordered lab work. They were particularly interested in quantifying her LEMS antibodies, and hoped the Rituxan has reduced these levels. (We have not received results yet.)

Once the nurses had inserted the IV and drawn blood, they began a short drip of Solu-Medrol (methylprednisolone) and gave Grace Benadryl and Tylenol. Usually all of this takes around an hour and a half, depending on the pharmacy that day.

Then, we settled in for the Rituxan. The nurses run it slowly to prevent adverse reactions. It usually takes us about 10 hours from this point to completely finish the infusion and do a flush, along with a 30-minute observation at the end.

It is a very long day but well worth it. So far, we have not seen any adverse reactions or side effects from the Rituxan infusions. It is an immunosuppressant, so we have been extra cautious during COVID-19. We were also carefully advised about when to vaccinate. Grace needed to get it at a particular point in her Rituxan cycle.

The only other stressor related to Rituxan has been some hair loss. Grace has beautiful, long, thick hair. We have noticed her hair thinning significantly since beginning the treatment. But many people report thicker and healthier hair after starting Rituxan, so I cannot be sure what exactly is causing Grace’s hair loss, though it does seem to coincide with her infusions.

Overall, Rituxan has been the treatment we hoped for. Grace still has limitations, but Rituxan has given her so much of her life back. Hopefully in the future, there will be studies and documented cases attesting to the benefits of Rituxan fo LEMS patients.

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Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.